Millions of people live with the challenge of managing and treating glaucoma, which threatens their vision but about which they often know little or nothing. With our population aging, the number of adults and seniors with glaucoma is expected to increase 50% by 2020.
Because glaucoma is difficult to control and impossible to reverse, catching glaucoma before it steals sight is the primary focus of glaucoma research and public information. Nevertheless over a third of the people with glaucoma do not discover their condition until damage to their optic nerves and deterioration of their vision has progressed signi”cantly.
Studies document how little time doctors spend talking with their patients about this complex vision-threatening disease. Knowledge is power. People need technical issues and information distilled without being watering down. An in-depth, dynamic web resource that clearly presents the many facets of the eye-brain continuum, the possible causes of their glaucomatous damage, the tests and measurements used to diagnose and track the progression of their glaucoma, the benefits and risks of various treatments, the lifestyle changes that can protect vision, and the support and vision loss resources available will empower those with glaucoma to be an active agent in preserving their sight.
At a time when more and more people around the world turn to the Web for information and help, the many websites presenting glaucoma information today still offer only brief high-level presentations of the information and guidance those with glaucoma and their caregivers need. We will develop a dynamic, broad and deep web resource presenting information at many levels – making it a valuable resource for the broadest audience – that presents information from trusted sources written and presented in language that is accessible to the widest possible audience, clearly explains the testing and imaging used by glaucoma doctors to evaluate a person’s disease and to track the progression of that disease, offers guidance in communicating with and asking the important questions of one’s glaucoma specialist, acts as a clearinghouse for the best materials available, and provides a social networking forum for discussion and the exchange of information and experiences around glaucoma diagnosis, treatment and research.
As a consortium of professional organizations, clinicians, technicians, vision rehabilitation professionals, patient advocates and patients, we will bring currently disparate efforts together into a collaborative and efficient delivery and support system for those dealing with glaucoma, a system that will empower them to become active partners in their treatment and encourage doctors to offer their patients the resources and information they need.
Needs and challenges
The more a patient knows about the many facets of the eye-brain continuum, the possible causes of their glaucomatous damage, the tests and measurements used to diagnose and track the progression of glaucoma, and the benefits and risks of various treatments:
- the better able they and those who support them will be able to deal emotionally with the threat to vision they face.
- the better able they will be to discuss their disease with their doctor and make informed choices around treatment decisions.
- the more likely they will be to adhere to their treatment plan.
- the more likely they will be to pursue beneficial lifestyle and nutritional changes.
We need an online glaucoma resource center that:
- provides information at many levels, making it a valuable resource for the broadest audience – an absolute necessity given the range of people facing glaucoma. Websites are ideal for this — better than books and more accessible! Information can be available in levels or layers – go here to learn more, dig deeper; go here for even more, e.g. research reports and abstracts… The more one knows, the more one wants to know.
- is well organized and designed to present clear learning paths and exploration paths.
- presents information from trusted sources written and presented in language that is accessible to the widest possible audience.
- presents the broadest range of information on “glaucoma”, utilizing graphics, animation and video to present complex scientific information in a way that patients can understand and apply to their own eyes.
- provides understandable but thorough explanations of the human eye and the eye-brain connection, the optic nerve, the importance of blood flow, the immune system…
- clearly explains the testing and imaging used by glaucoma doctors to evaluate a person’s disease and to track the progression of that disease – essential for someone’s ability to understand their test results and understand their progression.
- explains the mechanisms for measuring IOP, including the limitations of random measurement, diurnal variation…
- explains the various mechanisms for testing visual fields, including how to read the tests, their limitations, the strengths and limitations of the various methodologies..
- presents in-depth descriptions of the currently used glaucoma medications, including study results relating to their efficacy and their know side effects.
- describes surgical procedures along with the benefits and limitations of each as well as potential risks.
- offers guidance in communicating with and asking the important questions of one’s glaucoma specialist.
- doesn’t present glaucoma — a multifaceted collection of diseases — simplistically – that, for example, presents glaucoma as a problem of progressive neurodegeneration rather than IOP, non-pressure-dependent risk factors . . .
- presents the broadest range of information relevant to a glaucoma patient, e.g. neuroprotection, diurnal IOP variation (and the potential of self-tonomotry), glaucoma and sleep, challenges of measuring and treating advanced glaucoma, etc.
- includes research and information on both “alternative medicine” approaches and “lifestyle” and other-than-medical approaches to glaucoma such as nutrition, herbal supplements, exercise, stress reduction …
- acts as a clearinghouse for the best materials available. Right now each organization creates its own illustrations of the eye, animations of progressive vision loss, etc. Our resource center should bring together the best of what’s available, creating a community resource.
- is dynamic and up-to-date. New ideas about glaucoma are slow to appear on the websites most people access for information. (Example: none of the primary glaucoma websites mention neuroprotection and glaucoma…) This is an exciting time for glaucoma research and hopefully for treatment, with new understandings of the physiology and biology of the optic nerve, glaucoma as a neurodegenerative disease, newly discovered components of the “disease” . . . An online resource must remain current to remain relevant and beneficial. And cutting edge research and new ideas must be presented in understandable language.
- provides a social networking forum for discussion and the exchange of information and experiences around glaucoma diagnosis, treatment and research.. Support is essential to those dealing with glaucoma. While some patients may have access to a glaucoma support group, most do not. An online networking community is vitally important, encouraging free sharing of resources, information, news and current events, expertise and experience on issues relating to…, as well as providing support and comfort to those dealing with a lifelong, vision-threatening condition.
- provides up-to-date links to books, articles, reports, videos, etc. on glaucoma research and treatment.
- emphasizes the importance of tools and services available to help glaucoma patients deal with vision loss. This would include partnering with services such as VisionAware, Lighthouse International…
- provides materials and guidance for glaucoma awareness outreach.
To see a preliminary, draft outline for the proposed glaucoma web resource please email me >>>